“Your boy is one of the very sick ones.”

February 16, 2016

A virus more frightening than Zika is breaking out in Queensland. Baby Mac Jensen was one of the lucky ones who survived the Sydney outbreak in 2014, but what they went through was nothing short of a nightmare.

More than 50 newborn babies in Queensland have contracted the relatively new parechovirus, a potentially deadly disease that can cause hepatitis or encephalitis in newborns. It was first recorded in Australia in December 2013 and since then has infected hundreds of babies and young children.

Mum of two Clare Patience recalls the nightmare she went through when her newborn son, Mac, picked up the disease in Sydney in 2014.

Clare's story

My boy bounces with health. He’s shiny cheeked, bright eyed and incredibly charismatic. It’s hard to connect him to that same vulnerable body that lay so limply in the intensive care unit at Randwick Children’s hospital less than two years ago, while the doctors raced to discover what kind of aggressive virus it was making a mockery of his immune system.

It’s taken a while, but I can now summon up the memory of those little veins collapsing from the weight of cannulas, the insidious mottled grey hue of his skin as he was pumped with morphine, and the sound of the gasping CPAP to assist his breathing.

We thought we were being overcautious

When we took him to emergency as a tiny 13-day-old I actually thought we were overreacting. His temperature was 38.5 degrees, there was a tiny bit of a rash and he was limp and lethargic; but he was a newborn, and that’s not so strange. I was sure we’d get into the hospital and be turned around; I think I even made a joke about it to my husband. Denial is a funny thing.

It wasn’t until we walked into the waiting room at emergency and felt the burdensome weight of pain, injury and illness around us that the enormity of it all hit me. Why was I here with my newborn? What was happening? I couldn’t speak but the nurses seemed to read my stricken face and whisked my tiny little boy and me into triage.

Little Mac was only 13 days old when he contracted the potentially fatal virus.

Clare could barely comprehend that her baby boy was in ICU.

Again, everyone seemed calm as I sat in the chair and managed to stumble through the symptoms. It wasn’t until his heart rate was measured, over 240 beats per minute, and they saw his blood pressure dropping that someone said urgently, “Get this baby into emergency right now, he’s going to have a heart attack” that I realised that my worst fears were actually happening.

Watching a virus take over your baby is a terrifying thing. We watched the lacy rash rise up across his beautiful belly, across the shoulders I had kissed so many times already and to his neck, while his stomach distended and he groaned in agony.

The thing was, no-one knew what were dealing with. All around us emergency raged on with overdoses, stabbings and heart attacks coming in, while my husband and I sat in a curtained-off corner with our tiny newborn thinking his heart would stabilise in the next five minutes or so.

I thought he was going to die

There were multiple lumber punctures, nose swabs and blood samples taken. We held him down as they stuck needle after needle into him, and told him he was so brave and that we loved him. They suspected meningitis, but all the tests came back negative and I thought, “Oh it’s over, it’s just a cold”.

Finally, around 3am I was taken to children’s ward and my husband went home - we were both still sure we’d be sent home the next day.

Instead, things got a lot worse. Mac was lying in my arms and by now, sepsis had set in and his blood pressure dropped dramatically once again. The young resident lost her nerve and called in help from the head of the neonatal unit.

“How far away is your husband?,” a kind nurse asked me and I genuinely thought through my fear, exhaustion and emotion that she was asking because Mac was about to die.

Tears just dripped down my face as they stood over Mac and me discussing options and suddenly, we were on our way to intensive care at Randwick Children’s. We had gone from tentatively popping into emergency, to heading to the place no new parent wants to visit.

The absolutely amazing Newborn and Paediatric Emergency Transport Service (NETS) took over and delivered us into an isolated infectious diseases room in intensive care, where a team of doctors and nurses had assembled for briefing. I hadn’t slept for about 48 hours by this stage and the out of body feeling was intense.

How could it be my baby lying there as masked-up doctors and nurses peered at him, trying to unlock this nightmare of a mystery?

“Your boy is one of the very sick ones.”

My pure and beautiful water-birthed baby was now pumped full of antibiotics and painkillers.

The head consultant said to us, “Some kids are in here and we know they’ll be OK, some come in who are very, very sick; and your boy is one of the very sick ones.”

I kept thinking that there was a medicine that they’d find to cure them, but that doesn’t exist. All they can do for a virus is support the baby while it fights.

Our only stroke of luck in the whole ordeal was that we were at the tail end of a parechovirus outbreak in NSW. Twenty babies, all less than three months, had been admitted and discharged just a month before us. I often think about what the poor parents of the first few victims of the virus must have been through.

Our little man was the youngest, but at least the doctors at Randwick had an inkling of what to expect. “The symptoms are the same but it’s our job not to assume this is the answer,” we were told as Mac was prodded and his brain x-rayed, as they mapped and monitored the spread of the illness. At that stage, we had a four-day wait before we could get any confirmation on parechovirus, but researchers have since come up with a test that takes 24 hours and I hear a vaccine is on its way too.

We stayed in intensive care for just a little more than a week and I was absolutely blown away by the level of care they provide. We had a nurse every day and night dedicated to Mac’s care. They cleaned him, monitored and adjusted him for me as I sat by his side pumping milk, hoping that one day I’d be able to feed him again. They helped me wrap him in my tops and jumpers so he could smell me and they helped untangle the wires and cords so my husband and I could cuddle him as he began to improve.

I also met some very strong mothers in there too. There seemed to be an unspoken agreement not to talk about why you were there, but gentle chats about mobile phone chargers and the news over Styrofoam cups of tea seemed to help all of us.

The emotions still knock me to the floor

Reading that the virus is again rearing its ugly head this month fills me with such sadness because seeing how quickly it takes over is terrifying. It’s actually impossible to process the emotions of that time.

But having come out the other end, I just feel that we got really lucky. It’s so hard to know when to take your newborn to emergency, and I’ve spoken to many GPs since our experience who still haven’t heard of the virus.

I’m actually proud that Mac’s case study is taught at RPA so that doctors are now aware of what signs to look out for if a baby is admitted.

Today Mac is a bouncing, cheeky two-year-old.

Be careful around newborn babies

So much remains unknown, but my lesson from this is to be very careful around newborns.

Be that person who washes your hands before cuddling them, keep trips outside the home to a minimum and teach little kids to meet a new baby without touching their faces or hands.

But most of all, just go to hospital if your newborn has a temperature. You will never regret the journey.

What are the symptoms of parechovirus?

Parechovirus is transmitted through respiratory droplets, saliva or faeces from an infected person.

Symptoms include:

Fever

Irritability

Skin rash

Rapid breathing and heart rate

Diarrhoea

In severe and fatal cases it attacks the central nervous system causing meningitis, encephalitis and even sepsis-like illness.

There is no specific treatment for parechovirus; treatment is supportive only, but most children recover with intensive treatment.

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